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New Symptom - Leg Twitching and Jerking

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Posted 12/9/2021 3:40 AM (GMT 0)
I have a disturbing new symptom - leg twitching and jerking. It has happened a number of times recently and occurs at night before bed. It’s happening right now.

I have had this before, but only on rare occasions, and always due to something in treatment. My first memory was after starting either houttuynia or sida acuta. It happened again another time, but I don’t recall what, if anything, I connected it to then.

This is at least the 3rd time recently it’s happened at night before bed. I don’t know what is going on.

Anybody else have this? What can you tell me about it?
Posted 12/9/2021 5:07 AM (GMT 0)
I've dealt with Restless Legs Syndrome (RLS) for years and wonder if what you're experiencing is similar? The RLS doesn't affects me every night, thankfully. But, when it does happens, it is at night and just before bed.

Over a decade ago, after an in-clinic sleep study, I was diagnosed with Periodic Limb Movement Disorder (PLMD) and Sleep Apnea. This condition happens during sleep.

Has anything recently changed with diet, supplements, environment, etc., as far as you're aware?
Posted 12/9/2021 6:24 AM (GMT 0)
I have myoclonic jerks which can manifest that way. Bartonella treatment helped it get better. But I still get them when weak, most recently they get triggered when my bp runs too low.
Posted 12/9/2021 5:33 PM (GMT 0)
the human electrical and nerve conduction system is a fickle thing. millions of nerves and receptors . when the line gets busy it sends the wrong signals so whats clogging up the works ?! bartonella steals magnesium and calcium to build biofilm structures not just impeding blood flow but disrupting the careful electrolyte ratios need to contract and relax the muscles normally.
when i first got iv magnesium the twitching subsided. dr k says any oral mag is ate up by the pathogens in gut and rarely gets to the bloodstream, try letting mag oil dry on affected leg and see if twitching stops , maybe a 'bandaid on a gushing wound' but outta help.
1) remove offending pathogens off of nerve bundles
2 ) repair myelin sheathing slowly.... keep us posted
Posted 12/9/2021 9:00 PM (GMT 0)
Great posts everyone.

Dude: I have the same, especially now that I'm treating Bartonella.
In fact, it's kind of like my whole body has some kind of restless syndrome.
It was usually just my legs but it seems to progress.

Did your sleep study say anything about your heart?
Apparently my heart stopped in my sleep 3 times during the study.
They never really said anything more about it though, so I guess it wasn't anything concerning.
Posted 12/9/2021 10:47 PM (GMT 0)
Hmm... I feel like someone's heart stopping even once is noteworthy. Then again, I didn't go to medical school.

As for my heart, they made no mention of it. In the years prior to and subsequent to that sleep study, however, I did have cardiac workups that were unremarkable.

In hindsight, what puzzles me about the sleep study and diagnoses is that I don't recall them offering any sort of treatment or guidance. The sleep apnea was "moderate" and they never mentioned whether it was obstructive sleep apnea or central sleep apnea. In fact, I didn't learn there was more than one type of sleep apnea, until another in-clinic sleep study about eight years later -- which allegedly showed both types of sleep apnea.

But, that was 2008. Perhaps I'm not remembering the situation correctly. Certainly, I didn't get a CPAP or any prescription medications from them.

Over the course of 2019 and 2020, I ended up with two CPAP machines (each from different veteran health clinics in different states) with different settings. Then, in 2020, I also had an in-home sleep study that showed I stopped breathing "only" five times per hour. With the result of that in-home study, they determined I no longer met the criteria for needing CPAP therapy.

So, to recap, the doctors favored the data of a simple, in-home sleep study versus two in-clinic studies (about eight years apart) showing sleep apnea -- the second in-clinic study reporting both types of sleep apnea.

I did the only thing I could do to save my sanity: I stopped consulting with them.

Actually, I tried to have another consult, but the doctor didn't call at the appointed time. After spending the next 20 minutes trying to call her with no answer, I gave up for the day. She called me about three hours later, and, as I wasn't expecting her to call that late, I missed her. She left a voicemail asking me to call her within 30 minutes. I called within 15 minutes and reached the clinic voicemail informing me they were closed for the day. I reported the matter to the patient advocate and never did receive another call from her or any other sleep doctor.

That's when I gave up.

It was during 2020, so maybe I should've lowered my expectations...even more.
Posted 12/9/2021 11:02 PM (GMT 0)
"and never did receive another call from her or any other sleep doctor."

This is so disturbing how they treated you. It's just plain awful.
I wish I had known about this, I would have given you my CPAP machine. It's gone now.
Somehow my sleep apnea just stopped one day.

"I stopped consulting with them."

Yeah I don't blame you, what a mess. It makes me so upset to read all this.
I think you can sort of buy CPAP machines without a prescription on ebay and similar websites.
Many even unused/brand new.
Not sure if that helps but thought you might want to know.
Sorry to hear all this Dude.
Posted 12/9/2021 11:44 PM (GMT 0)
Before diagnosis and treatment - when I went to bed - before falling asleep one of my legs (the right one I think) would jerk and randomly kick up.

I can’t remember when it went away - so not sure if it was Lyme or bart
Posted 12/10/2021 12:24 AM (GMT 0)
Thanks for the supportive words, Rainy.

Aside from being frustrated at the inability of the Veterans Administration (VA) to follow through with basic tasks or provide meaningful help in some of the areas I've asked about, I don't give them too much thought.

Several weeks ago, they directed me to go the emergency room of my nearest hospital, based on my symptoms. So, I did. The next day, I followed up with the VA and relayed the instructions from the attending ER physician from the prior night. I told the nurse that I was advised to consult with a VA specialist. She was to relay this to my primary care doctor. I expected a call with a referral within a few days, but no one ever called me.

Again, just to save myself frustration, I didn't bother trying to chase them. Dealing with them is almost always a hassle. Rarely do I get someone on the phone when calling. Return calls, when leaving a voice message, usually take 2-3 days to get returned and it's usually when I'm sleeping. Appointments are often booked out 3+ weeks. When I do get one, it's rushed and focused on symptom suppression rather than root cause analysis.

I'm fortunate that I'm not a combat veteran with PTSD. Those folks need some of the highest levels of care, yet I read about the increase of combat veteran suicides, due to their inability to get timely and/or adequate care. Many of those suicides happen in the parking lots of VA hospitals. That was their final message to the VA.

To be fair, the VA needs more staff. But, for whatever reason, they don't hire more. The doctors, nurses, and other staff feel the pain, too. I have had good luck with my eye doctor at the VA. They tend to be easier to access and more responsive. So, the VA isn't all bad...just mostly.

As I wrote elsewhere, my medical care through the VA is likely similar to what the disadvantaged receive through the federal and state programs of Medicare and Medicaid here in the U.S. If true, then I see why the poorest among us have some of the worst health outcomes. Getting care from these organizations is akin to a Lyme patient trying to get help from an IDSA-trained doctor. They don't deviate from the "Standard of Care."

Sorry, WalkingbyFaith. I've taken your thread off topic.
Posted 12/10/2021 7:57 PM (GMT 0)
i think these involuntary movements are just a sign of the brain inflammation that we know these infections cause

slightly different symptoms depending on exactly which bit of the brain is affected

but especially the white matter is prone to these infections and this can cause these involuntary movements.

so to my mind its not a new disorder that needs treating - more just confirmation the the original problem is still there and should be addressed

there was some good information on the topic in the Dr J slide presentation i posted the other day - i think he had at least a dozen slides on the various bits of the ban and what symptoms to expect when they are affected

i know you are trying to treat already WBF - so i don't think this is anything new as such - just one of lymes many odd symptoms -

if it helps i find most of the odd things typically come and go again by themselves only for a new oddity to pop up another time - and also go away again - so i try to remind myself of this whenever something new and alarming happens.
Posted 12/11/2021 1:42 AM (GMT 0)
Dude that sounds awful.

The reference you made to IDSA-trained doctors really made me understand what you mean.

Are you at least able to get the medication you need? Like for example some online pharmacies sell them.

Just thinking out loud, wish I could help more.
Posted 12/11/2021 4:16 AM (GMT 0)
Thanks, Rainy. Your interest and concern are greatly appreciated.

While they haven't been helpful in trying to determine the actual causes of my symptoms, the Veterans Administration is usually happy to prescribe medications to manage symptoms.

When I've had joint and muscle aches, they sent me a bottle of pain pills that (due to the size) looked like they were meant for a horse. I didn't take them.

I've mentioned to them that I was having more headaches and migraines (which started in the military, 30+ years ago, following dental work and numerous vaccinations and immunizations), again, they offered pain medication. I declined.

After mentioning my fatigue and always waking tired (no matter how much I sleep), I raised the issue that my septum has become quite deviated over the decades and I often resort to mouth breathing. I asked about seeing a Ear, Nose, and Throat doctor to consider the possibility of surgery to correct the structure of my nose and see if it helps my sleep. Instead, they sent me several bottles of Flonase.

Again, I gave up on them.

Like many of us, I'm not against using medication for symptom relief. When I notice the onset of migraine symptoms, I take an over-the-counter medication that often reduces the severity enough for me to tolerate it. My chief complaint with them, as you know, is the lack of interest in finding the source. I'd just like them to try.

No big deal. I just need a job, so I can have income again and then be able to go see providers that are open to discussion and are willing to help me. My age and being unemployed so long are working against me.
Posted 12/12/2021 3:18 AM (GMT 0)
Hi Dude,

I made a thread here, hope you see it:

https://www.healingwell.com/community/default.aspx?f=30&m=4275283
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